Wednesday, May 22, 2019

Dear Sam

Dear Sam,

I know things weren't easy for you in the beginning.  It was hard to watch you wanting to do things but having to make concessions for your big brother.  I want you to know that even during the times you were disappointed I was proud of the way you handled it.  It seemed like even at a very young age you understood that you had to put the needs of the family before your own.  But even as you struggled to understand how everything works, you had a compassion and love for him that only a strong and beautiful person could have.  It is not fondly that I remember how you would scurry under the kitchen table when you realized Tyler was entering the room without me.

Remembering these things makes it all the more special to have spent the time together last week in Florida.  Giving you wonderful and loving memories of your growing up is extremely important to me.  I want for you to understand the lessons of putting other's needs before your own, but also to feel that your happiness is important as well.  

Like most Dad's walking this earth, I wish I could be perfect and I am far from it.  Raising a typical child in the typical world is a tremendous challenge, and with your Mom and I only having experience in raising a non-typical child before you, we are feeling our way through. If you every wonder if we know what we are doing, the answer is "not really...but we are trying".

We measured our success with Tyler in how his basic needs were cared for.  Did he eat well, sleep ok, get some exercise, go to the bathroom ok, and not have any meltdowns?  Then it was a good day.  Let's hope for another one tomorrow.  With you it's much different and more complex.  The basics are not such a concern because you can help attend to most of those yourself.  The concerns are if you are getting homework done, being treated ok, treating others well, learning to be a good friend, and learning the lessons of life in a way that is appropriate for a 10-year-old.  Its hard to measure!  And for most of these things we won't truly know until you become an adult and start applying lessons in your own life.

Then I look at this picture......

Perhaps this picture tells me what I need to know.  I can see in your face the true joy you are experiencing.  There is no sign of a little girl ducking for cover under a table, or struggling to understand how she fits into her brothers world.  This is a young lady who knows who she is and is truly happy.  She is brave.  And she trusts that when she spreads her wings she will be able to fly.  

My wish for you is that you continue to grow and experience the world.  But never forget who you really are.  Never forget that feeling of empathy and compassion that you have for your brother.  Be willing to appreciate what you have, but don't be afraid to challenge the system and ask for more. Never forget that I, your Mom, and your big brother love you with all of our hearts.  You are unique and special. And most of  Smile every day like you did on this day.

Be well and God bless.    Tom

Monday, May 20, 2019

Living in the Middle

There was a period of time where we raised Tyler in the non-typical world, along with Sam in the typical world.  If you take that last sentence literally, we were trying to live in two worlds at the same time, which is next to impossible.  This may have been one of the very reasons that we knew we had to secure a future for Tyler that would allow him to live life in the non-typical world.  It also shined a light on why the rest of us needed to secure a future in the typical world.

I believe there has to be an ability to bring those two existences together...a meeting in the middle if you will.  The amount of "middle" you can find may largely depend on the severity of the disabilities, the family dynamics, and so on.  But even where there is a "middle", there will always be two very separate circles.

There are families that live for many years in the middle, and can do so with a great amount of success.  But as this graph illustrates, the middle is often the smallest area, and for many families the most difficult to maintain.  When life is riding in the middle things are in harmony.  When the two circles pull apart, things can go wildly out of balance.  When the balance shifts too far into the typical world, the non-typical person can become lost, frustrated, confused, and more prone to act out.  When the balance shifts to far into the non-typical world, the typical family members can become left out, isolated, and depressed.  In our case we tried to live most of our lives in the non-typical world to accommodate Tyler as best we could.  Unfortunately that also lead to our own issues that went unaddressed.  Without a doubt we had times where we found success in the middle.  But it never lasted long, and the times outside of the middle were brutal.  The hardest thing for me to understand at that time was that when we were living in the non-typical circle, we were not doing anyone any good.  We we over-accommodating him, and underachieving in nearly every aspect of our lives.  Worse yet, attempts to pull him into the typical world were mostly met with disaster. 

Our decision to move Tyler to a residential home was to create worlds that we could all live in, and a middle that we could maintain more consistently.  He had to have a living condition that was tailored to who he really is, and not trying to force him to relate to a world he didn't understand.  We had to have a living condition that allows us to be parents to Sam, be a married couple, conduct ourselves as more functional workers, and focus on our health as we enjoy our middle-age years.  Our middle is now seeing Tyler at church on Sunday's, and taking him out for pizza or Mexican food.  We spend short, but quality time there before everyone returns to their circle.

If you are balancing two worlds, carefully examine where your middle is.  If you can live comfortably in that zone, you are probably in a healthy place at the moment.  But always remember, circumstances will dictate how much room you have in the middle.  If you are living in a middle which has squeezed you to your limits, or you find yourself bouncing wildly between circles, you are in a dangerous place.  Don't be afraid to find alternative ways to broaden the middle, or if necessary, redefine the circles to create all new worlds.

Be well and God bless.   Tom

Monday, May 6, 2019

Tyler is Struggling

Tyler is struggling.  

A few weeks ago his demeanor turned sour.  Right now he is basically unhappy with everything and everybody.  So much progress that had been made with healthy interactions has been lost once again.  

Obviously the worst part is that my son feels bad.  Something is wrong and I am powerless to fix it.  I have passed on a few ideas of what my be contributing to his mood, but without his ability to give us feedback, it is simply a crap shoot.  Its akin to when a baby cries and cries but every remedy you try just leads to more crying.  Only with Tyler when he is miserable he can effect those around him in the same way.  He becomes very difficult, almost defiant.  It's so sad because that is NOT who he is.  Tyler is my grinning young man.  He is reacting to something that is way off.  Is it physical?  Perhaps something like a UTI or allergies?  Is it a form of depression that he can slip into?  The truth is that we just don't know.  

What is happening is not exclusive to the special needs parent.  There are parents right now, reading this, that are watching their children struggle.  Perhaps it is a problem with addiction and their child cannot find their way out of it.  Or maybe it is dealing with depression, bi-polar, or schizophrenia.  Worse yet, perhaps there are parents dealing with a child that has been lost in one way or another.

As Tyler's parent I still feel responsible for his happiness.  I still feel that I have to figure out how to make him fit better into this world.   I have to reach out to him and make it all work out, somehow, some way.  It's my job to have those answers! heart breaks at the reality of the situation.  I don't have superpowers any more than his caregivers do.  We are all rowing the same boat looking for an answer that we may not ever have the ability to figure out.

When Tyler struggles, I struggle.  Its a struggle to stay on task and continue to move forward with life.  Of course my brain tells me that things will turn around, and that we have a great staff, and that I need to have faith and keep moving forward.  But my heart still bleeds.  And as long as he is unhappy, I can't be happy.

And so it goes for parents who care for their children with all of our heart and soul.  We go on to work and concentrate as hard as we can, knowing a piece of us is not quite there.  We smile or laugh, and sometimes have brief moments where the sadness goes away, but it doesn't last.  We hold onto hope that the next day will hold the very answer we are looking for.  We hold faith in one hand and doubt in the other, wondering why our child is made to suffer.  We question what purpose our child's pain could possible serve.  We struggle.

For those of you joining along side of us in our struggle, we feel your pain.  We pray for you and your children.  We have to keep believing that in this world, or in the hereafter we will find peace for our children and peace for ourselves.  

The struggle doesn't last forever.  It can't.

Be well and God bless.   Tom  

Thursday, April 25, 2019

The Moon Picture

One bit of feedback I frequently receive from people who read this blog is how much they like the picture of Tyler pointing to the moon.  They want to know if there is a story behind the photo.  And I suppose that there is...

Taking a vacation with Tyler certainly had its challenges.  There were always so many logistics that it made it hard to relax and truly unwind.  For Tyler, keeping him at a comfort level where HE could relax was just as much of a challenge.  Even a day at the beach day at the beach.  Let me give you a few examples of how a family like us has to think when taking a seemingly simple trip to the beach:

  • If we stay too many days he will get anxiety due to missing his things and routines
  • On the ride down we can't stop at a public restroom that will be crowded (he will lash out) or dirty (he touches everything)
  • We have to pack bed protectors and sheets so that if he has an accident overnight he won't ruin someone else's bedding
  • All familiar toys and DVD players need to be packed, along with wall and car chargers
  • Eating out in restaurants will be done early in the afternoon prior to dinner crowds
  • Shopping will be done during the dinner hours to avoid the evening crowd coming in
  • We know how to change a pull-up while driving on the freeway
I'm sure if I thought long enough I could come up with 20 more, but you get the idea.  It never deterred us from going, it just made us go to places that we knew we would have the best chance of success for all of us.  After all, it was important that Tyler have every opportunity to enjoy some sun on his face, and toes in the sand.  

Back to the photo....Myrtle Beach was always his favorite place other than home.  He got familiar with the condo we were using each year to the point where he recognized it and he felt a comfort level that helped everyone.  When thinking about it, it normally went pretty well and I can't think of any beach-related horror stories other than one mild jellyfish sting when he was little.  One of his most pleasurable moments came around dusk.  We would be done with dinner and a little shopping, and would come back to the room for the evening.  Traditionally we would head down to the beach, which would be absolutely empty, and just wander around.  The kids would splash in the water and explore.  Tyler liked to wade out just a little way, and look out over the horizon.  On this occasion the moon caught his eye.  He stood smiling, and over and over announced "Moon!" as though welcoming an old friend.  I snapped the photo of my boy in a truly happy and content moment.

The beach always had that effect on Tyler.  He obviously felt a comfort and a unity with it.  There was no fear, and really no threat that he would wander too far or fall into the surf.  He seemed to understand the relationship he had with the ocean, and respected it.  It was a fascinating relationship that I won't ever understand in quite that way.  I believe the sound and subtle movement are soothing for Tyler (as I understand is the case for many children on the spectrum), and I wonder what else happens in that mind as he stands there.  I'd give anything to hear what he is thinking so I can understand it.

As I've written, a very important goal to me is to someday spend my days close to the beach.  I too feel a kinship and peace with the ocean that is hard to explain.  And now that Tyler has moved away, its a place that I feel very close to him.  Its something that we shared and it may be the only place and time on this earth that we both found peace at the same time.  

Be well and God Bless.   Tom

Saturday, March 16, 2019

Tribute to Pastor Dave

Recently we have learned that our Pastor has decided to continue his work in the special needs community and he will be leaving our church.  We all view this as a ministry and an extension of what he taught us every week within the church walls.

Pastor Dave and I met in an organic way, just two guys taking walks around the neighborhood.  Little did I understand that my walk with Tyler would lead us to him and his church.  Dave and I immediately discovered we had a lot in common.  We both had a passion for helping the special needs community, we both love football, and we both want a peaceful world for our children.  And like most people we have very profound differences, especially politically.  But we want the same things in life which is far more important.  Most of all, we both love Tyler and what is best for him.

Our impromptu meetings in the neighborhood turned into Dave introducing us to what would become Tyler's care agency.  My trust in him allowed me to follow his recommendations, which became the very foundation of Tyler's life today.  For this reason alone I owe him so much.

Once Tyler became established in his new home, he started attending Dave's church on a weekly basis.  Within a few months Dave asked if he could baptize Tyler.  We were happy to agree and attend the ceremony.  We immediately felt the incredible inclusion and love that the congregation has for Ty.    This lead to the girls and I attending each week, which has now evolved in my in-laws doing the same.  It has also lead to a few dozen people receiving new study bibles through Tyler's bible program.

As you see, Pastor Dave has touched our lives in more ways than we can count, and we are thankful that he will continue to be part of our lives.  But most of all, I'm proud to call him my friend.

Be well and God bless.    Tom